All healed

Callie is doing great since her surgery and all the trips back and forth to Minnesota. Her follow up went great. All of the doctors were very happy with her progression. The neurosurgeon made the comment previously how serious her skull was, which made us very grateful to have found Gillette. Hearing this is something he would see in a medical journal it was so serious was a bit shocking, but really assures us this was defiantly the right thing to do. Since surgery and recovering from her infection she has become so much happier. She was always a very happy little girl, but it is so different now. She also has so much energy and is always giggling and moving. She stands so much better, is always crawling and wrestling with anyone on the floor (and she likes her brothers head the best).

With our follow up the infectious disease doctor (ID) decided to keep her on her IV medications one more week as she would be having heart surgery in January. We had a great plan in place until we got home from the 3 hour drive and her PICC line broke for the second time in 2 weeks. We were not even home more than 5 minutes. I truly just wanted to sit and cry. All I could think was there was no way I was driving back to Gillette and no one locally will replace it at night. After talking with Gillette I told them I was not going to drive back and she was just going to go without her medication for the night. They agreed this was ok and we could just talk with the doctor in the morning. They decided there was actually a greater risk of infection to replace the PICC again when she really did seem better so they had the local pediatrician pull her PICC line that day and we started on an oral antibiotic for another 10 days. I think Callie was so happy to have everyone stop messing with her and just get to her whole arm back.
It was confirmed this week that Callie will be having open heart surgery on January 7th. They will be fixing her ASD (whole in the heart from birth) along with her pulmonary stenosis (narrowed pulmonary valve – where the blood is pumped out to the lungs). She will spend 1 week in the PICU. This has been something we have been monitoring since birth. She has been stable since she was 1 year old, however she has a significant blockage that we knew it was only a matter of time before she would need this surgery. We have been waiting for her to get bigger and healthier. It has been quote the balancing act for the doctors to determine when the right time is. With the potential surgeries and sedations coming up in the next year it is time to get her heart fixed. We need to wait 2 months before moving on with any additional surgeries as she will be put on blood thinners through the heart surgery.
We do not have a set date yet, however we are thinking beginning of April she will have her second cranial surgery done. This one will be for her forehead. The purpose will be to allow for her brain to continue growing and make additional space. There is a possibility that from the movement of the bone and swelling there her surgery had on her eyes to lift the lids will “break” and need to be re-done. Only time will tell. The third cranial surgery would potentially be the mid-face. At this point it has been put on hold and the doctor will just follow her a year after the forehead surgery to determine if it will be necessary. Originally we thought all 3 would be required so that was great news to hear that maybe it won’t be needed.
We are still in the process of trying to find an ENT doctor that is familiar with the choanal atresia (Closed nasal passage) to start talking through that. We know it is still a year out so we have not spent to much energy trying to find someone. There is a lot going on and we remind ourselves one day at a time. Callie is showing huge progression and we are so proud of her!

Zak also saw the doctors at Gillette while we were there. We are excited that he does not have the Craniosynostosis (fused skull) like Callie! The cranial doctor would like to follow him annually though as his mid face is slightly pushed back and wants to be sure that it does not become an issue. He also saw an orthodontist while we were there and confirmed he will need some oral work done at some point as he does have a very small mouth. We will be seeing a dentist at Gillette and then will continue to follow an orthodontist. We also talked to the doctors about Zak’s continuing head banging. There are a few tests that they can run to rule things out before it is deemed as behavioral. We are still working through that to determine where to start and how we would like to move forward.

Finally Home

Callie came home yesterday from Gillette. It was a very long weekend! Too long at that.

On Sunday she had her PICC line placed. They sedated her for it so it is considered a surgical procedure. The doctor said it went in good and they had no issues. The rest of Sunday was fairly uneventful for Callie. I must say though I was so impressed with the PICU doctor. We were moved to the main floor on Saturday so he no longer needed to follow up. He stopped by on Saturday and Sunday to check on Callie. He wanted to make sure she was doing well with the PICC and we were able to get it placed. He is by far one of the best doctors we have ever met! Yesterday we were able to get out in the afternoon after a whole long day of trying to discharge. She did come home on IV medication for 2 weeks. We have to go back for a follow up now in a few weeks

As for me, Sunday was very eventful! In the middle of the afternoon I went to run to the store to find out that my wallet was missing from my purse. I looked and looked and no luck. That is when I suspected someone stole it, however nothing else was missing so it did not make much sense. I looked online and realized there were several transactions that we did not do and that was when it sunk in that someone stole my wallet while we were down for the PICC line placement.

Doing good.

Callie had a very good day. The antibiotics have kicked in and no fever! Last night before they put in her IV they gave her some meds to relax her so she basically spelt from 6-midnight and on and off until 1:00am. She had a few naps through the night but mostly played. I am guessing she was so happy just to feel good. By 6am she was in full swing active mode! For the most part she has done well playing in the crib, which did surprise me a bit. I figured she would want more room to move. We were told during morning rounds that we would be moving to the floor today. Everyone knows how we feel about a main floor unit! Well at 3:00 we were moved.

This is our first experience on the floor so I was going into it with an open mind knowing how amazing everything has been up to this point. During admission onto the main unit Callie lost her IV. They were not able to flush it at all. We thought it was 'saved' however it was not. This brought up a whole new factor. The discussion that has been going on all day. Will Callie need to go home on IV medication? Results from the cultures are not back yet so we really just don't know for certain. If she goes home on IV medication she needs a PIC line (A peripherally inserted central catheter is a form of intravenous access that can be used for a prolonged period of time). If the infection is just a tissue infection she may not need to be on IV medication. So the big question is poke Callie who knows how many more times just to get an IV or place a PIC line in the morning (under sedation). The ICU doctor said wait until morning and the floor doctor wanted to put in an IV. Thankfully the ICU doctor that came on for night rotation came to the floor to see us as he heard they lost the IV (which he placed the night before). He was also the day shift doctor that followed Callie the whole week after her surgery. We talked through the issue and he agreed that he would wait until morning as it just is not worth poking Callie more. He talked to the other staff and no IV was placed. I have so much respect for this doctor. He truly understands our family, abilities to care for Callie and most of all he listens to what we want. After that was all dealt with all I have to say about the nurse we had is I hope the night one is good and I can get some sleep.

As for the PIC line it will be placed at 8am tomorrow. We are just assuming that it is going to be needed. We were really hoping to go home tomorrow, however by the sounds of it we may not be able to get IV medication on a weekend so we may be stuck until Monday. To make it even better both kids have to be here on Tuesday for appointments.

By the end of the day - well Callie is back to her old self. Full of spunk!

So many people have asked how I am doing as Chris is at home with Zak for this trip. Thankfully I do have help though as Grandma Kathy came along. Riding in the car alone with Callie was not an option. First thank you for thinking of me and asking, however I will tell you what most Mothers do. I am doing good. You go on peer love for your child and do what you need to do given the moment. Callie needs me the most right now and I need to be strong and supportive for her. I will say though I cannot wait for our life to get back to normal and get one good night of sleep as it has been a very long two weeks. I am also looking forward to real food as hospital food just does not cut it and a shake made with a blender (my morning breakfast shakes just are not the same).

Praying for some answers on all the cultures tonight along with Callie to continue with her healing as she is going in the right direction now.

Infection

Callie was admitted to Gillette Children's today for an infection. On Thursday she went to our pediatrician as the incision on the back of her neck was infected. The doctor ran a blood test however the incision was not draining anything to even get a culture. They did give her an antibiotic injection to hopefully get ahead until we received the results. Over night she spiked a fever of 104 and the incision started to drain. After Tylenol and ibuprofen the fever came down to 101. I called the pediatrician again to update them, however the results were not back yet. I also called Gillette just to let them know what was going on. After talking with the Gillette doctors this morning they decided the best thing was for us to come to MN and get admitted to the ICU where they know her best (as it relates to this surgery). We arrived in MN around 4:00pm. They were able to get a culture of her neck right away. The ICU doctor was going to put in a PIC line right away however anesthesiology would not approve the sedation as she has not been with out food long enough. We had to do an IV. The reason for wanting the PIC line was we could at least go home with that and do IV medication at home. They did get the IV in and were able to draw blood from it right away. All the labs have been sent in. They do have her on the IV antibiotics now as we wait for the results to come in. We are hoping tomorrow to get some answers.

Please say prayers for a speedy recovery so we are able to go home.

Settled back in

Callie has been doing great since she came home on Friday. It was a crazy morning the day of discharge and really ever since we got home too!

The hospital had got her off the medication that she was on around midnight, however the nurse thought Callie still needed it and gave her more medication very early in the morning. We asked the doctor to stop it and he agreed. We told the new nurse that was on that we were ready to go home and within an hour the Neuro PA and ICU doctored agreed she could go. Although we were defiantly ready and Callie was back to her baseline we were a bit shocked it was so easy. I thought for sure they would make us go to the floor for a few days. We quickly packed the bags and were outta there!

Callie did very good on the way home. She slept most of the way. We could defiantly tell she was happy to be back home in her surroundings. She was not to mobile yet and still not overly smiley as she was still tired, but we could tell that she was happy to see her big brother. I am not to sure what Zak thought. Callie has been sleeping on the mat in the living room that Zak plays on. I often wonder if he is thinking move off my mat.

On Saturday night Callie rolled over and was up on all fours. I could tell that took a lot out of her. By Sunday she was crawling again and all over the place. I was so amazed how quickly she recovered especially once back in the house. She was defiantly able to get some more rest. She is back to crawling on Zak!

While we were gone in MN Zak lost another tooth! We are not sure when or where. Chris was brushing his teeth on Friday night and it was just gone. This is the first one we “lost”. I think Zak is happy that his life is back to “normal” and we are back into his routine, although then we changed the time on him so that will take a few days to get used to.

Callie's going home

Code Brown

Callie had an awesome day.. other then one small issues. Code Brown! She had not gone since surgery so she got a suppository this morning. Needless to say she went, and went, and went. They actually stopped the IV antibiotic as she had peer liquid stools. It made for a lot of diaper changes this morning.

By midnight she will be off her IV med for pain and sedation. She is still in the PICU as she has to be closely monitored on this medication. Assuming she is going well tomorrow she will be moved to the Neuro unit. Both of the physician assistant for the doctors came by today. They were both pleased with how well Callie is doing and the progress she is making. She is still on a little blow by oxygen just to keep her levels us. This evening she played for about an hour on my lap. That was nice to see. She still is not talking much, just a few sounds here and there. Hopefully tomorrow we can hear more of her voice. She still tired easily so in time I am sure she will be telling us all about her story.

Callie had a visitor as well today from a close Friend. Zak's Godmother! It was nice to see her and catch up a little bit. It definitely makes the day pass quicker when it is broken up a little. Callie was being stubborn and really did not want to wake up when she was here.

If all goes well we are hoping to be home Saturday! It sure would be nice to get home and still have 1 day of the weekend to relax.

Happy Halloween - Part 2

Today ended up to be a good day! It definitely started out a bit rough. Since Callie got on new medication she has been doing so much better! She fell asleep around noon and really has been sleeping most of the day. When Callie was so fussy she started pulling her bandage off. We attempted to keep it on, but it really was kind of a lost cause. The neurosurgeon came to check on her and said we could get rid of the bandage and drain!! So Callie was no longer a Q-tip. The child life specialists brought her a costume! She was Tinkerbell. What a lucky girl, two costumes in one day!

 

It was fun today watching all of the costumes. Gillette had trick or treating at the clinic/hospital today. All of the staff (other than hospital nurses) were dressed up. Kids were able to trick or treat through the areas. When Callie's Neurosurgeon came in he was dressed up as a contractor. He said I heard there was a broken pipe. Started to measure the bed. It was quite funny!

 

The plan for tomorrow will be to ween off this medication and start her on meds that she could go home on. The swelling is starting to come down now which is great. Her hemoglobin tonight after he blood transfusion today was at 8.5. They will check it again in the morning to see what it does.

 

Our excitement for the evening was going to Ronald McDonald house for dinner. Miss Minnesota was there and provided dinner with a local family. She signed a picture for Callie. It was fun to meet her and see her talk with the families and play with the kids. She is very deserving of her title!

 

Daddy looking over Callie on Tuesday.

 

 

Callie sleeping on mommy today.

 

After the bandage came off!She got a bath,

new clothes and right back to sleep.

Happy Healing!

 

Her second costume.. Tinker! 

We called to talk to Zak today! He did not have much to say to us, but he sure listened well. He had his follow up with GI today and they were happy with how everything was moving along. He will need a weight check in 3 months though. He has pretty much hung out at 40lbs for a good year (actually almost 2).

Happy Halloween



Callie says "Happy Halloween!" I am trick or treating today as a Q-tip!

 

She was finally sleeping this morning for a little bit.

Doesn't she look like such a BIG girl too?

I am not sure what happened but I feel like she grew overnight!

 

The night started off fairly well, however she ended up having a rough night. Just very restless. We all know not much she wants to move, but she cannot as she is hooked up to so many things. Also, she really is not tolerating her CPAP mask for her sleep apnea so that does wake her from time to time and not to mention we all know how many times nurses are required to check on their patients and it is even more often in the ICU so that does not help. She did sleep well from 2:30-4:30. She is finally sleeping again.

 

We recently met with the ICU doctor. They have been monitoring her hemoglobin very closely. Ideally it should be around 11-13. She did have a blood transfusion during the surgery as the blood loss for the skull surgery is significant. Yesterday she was around 9 so they were on the fence what to do. It slowly has been decreasing, and it is currently at 7 so today they are going to do another transfusion. They said if she did not have a heart condition the would probably just continue to monitor her, however with her heart condition it is safest to transfuse her. They will do that this morning. Also she had a fever this morning or 101.4, which is slowly coming down right now. The doctor also decided to change her medication plan since she seems to soak up everything they give her. Due to the blood transfusion and the medication she will be spending the day and possibly the night in the ICU. We are still waiting for the surgeons to make their rounds and will find out if they plan to remove her drain and bandage today. I know Callie is hoping that they will as she is constantly trying to get it all off.

 

As for Zak he seems to be doing well at home with the Nurses and Family. On Monday night he slept almost 12 hours (going to bed at 6pm). I was sure to tell Callie that Zak went to sleep early as she was not there to keep him up. We definitely miss our little man. Both of us have never been away from him at the same time so it is hard on all of us. Thankfully it has been uneventful for him. Last week he kept us busy. He had an ear infection which is pretty common around our house. It was not clearing for the ENT gave us an antibiotic instead of the ear drops. He ended out having a allergic reaction and broke out in hives. This was not the first time that he had the medication either. He ended up getting his ear cultured and turned out is was MRSA again so they put him on different drops. It sounds like the new drops are helping.

 

If you have time we would love for you to sign the guest book or always feel free to leave comments. We like to hear from you.

Callie Day 2 Update

Callie has had a fairly good day. This morning they pulled her breathing tube which she did very well with. They also removed her catheter and Art line. She was definitely happy to see a few things removed. However she did get oxygen added since coming off the breathing tube. She was still a bit tired this morning and a little more swollen then she was yesterday. Slightly after noon she opened her eyes despite the swelling. We even saw a small smile from her today. This afternoon she became her feisty self - mom's can say that right :)  We are not really sure if she was in pain, uncomfortable with all the tubes or just unhappy to be at the hospital. Probably a bit of each. She kept grabbing tubes and removing her Oxygen. She started to pull out her drain a bit too. Hopefully she will not manage to pull it before the doctors are ready. The doctors decided to alternate her with morphine and valium every two hours. She seems to be doing well with that. She even took an hour and a half nap on Mama. It was so nice to snuggle with my baby who typically wont snuggle more than 5 min.

 

We did meet with both of the doctors physician assistants today. They both feel like Callie is right on track and where they would expect her to be. Assuming she continues to progress well we hope to be home Friday (Saturday at the latest).

 

We had lots of company and activity today as well. Chris's Parents were here this morning as they came with us yesterday and left today to be with Zak and the nurses. His Aunt, Uncle and Grandma came this afternoon. One of my close friends Summer came late this morning. It has been years since we have been able to get together so it made for a wonderful visit just to catch up and help pass the time. Tonight my Mom, Brother and sister-in-law are coming up. Callie did very well with all the company and hearing familiar voices.

 

Tonight we got a room at the Ronald McDonald house which is actually right in the hospital across the hall for the PICU. We are very grateful to have such a wonderful facility so close. Anytime you go through McDonald's be sure to leave your change. Every penny helps such an amazing cause!

 

A few pics..

 

Callie on Sunday after we cut her hair before surgery.

This was not as hard as I thought it would be.

Callie last night with her breathing tube

 

Callie tonight taking a nap!! Quiet time to Blog :)

This afternoon before she got mad and started

pulling on her drain (The red tube)

Surgery Update

I am finally sitting down to post an update on Callie's surgery today. Sorry to all of the people I told I will text when I post (I did not want to text you at 10:45pm).

We arrived at Gillette around 9:30 and were taken straight back to pre-opp. Surgery was scheduled to start at 11:15. They did take her back pretty close to scheduled time. It took them about an hour and a half to get her all set up. She had an IV, Central line (similar to a PIC line - a catheter placed into a large vein in the neck), arterial line (thin catheter inserted into an artery for blood pressures) and  spinal monitoring. The spinal monitoring is what took the longest as they put a bunch of small pin like monitors all over her body. This allows them to monitor her spinal cord functionality while operating on her spinal cord. Once they call all the line and monitors set up she was ready to go.

The first surgery was a Foramen magnum decompression which is a next surgery to allow her spinal cord to have more room. After about a half hour the doctor was already out to talk to us about her neck. He said she did Great. He removed a small piece of bone from her skull at the bottom to allow her spinal cord room. He said was about 1millimeter by 1 millimeter in size. He also said that her spinal cord was about 50% compressed which was very similar to Zak's. The difference in the two kids was that Zak's neck was unstable and needed to be fused to create stability where Callie's was still stable. He will continue to follow Callie as she grows to watch how her vertebrae grow and develop in case she every would need additional surgeries.

The second surgery was a bit more tricky. She had Posterior Cranial Vault Remodeling for Craniosynostosis (Skull was not growing so there was no room for the brain to keep growing) They made a cut from ear to ear over the top of her head. They had to remove the back section of her skull and move it outward to allow for room for her brain to grow. She had severe imprints from her brain into the skull. The inside of the skull should be nice and smooth, which hers was not. The doctor even mentioned this was one of the most sever cases he has seen with the imprints on her skull. The surgery did go well which we are very grateful for.

The doctors decided to leave Callie intubated (breathing tube still in place) for the night as she has sleep apnea and thought it would be best to let the machine breath for her for a while. When we first saw her she was not to swollen, however several hours latter she sure is swelling up with is very common and part of the healing process. They are talking about pulling the tube in the morning and seeing how she is doing.

The staff is absolutely amazing here. They do such a great job to explain everything to us. They area all so helpful and caring. We truly are in great hands!

We appreciate all of the prayers though the day and days leading up to surgery. We continue to ask for prayers as Callie recovers through the week. She will be in the ICU for 2 nights and then on the neuro floor for 3-4 nights.

Mom and Dad are holding up good. Just glad to be through day 1 as it is a long day. Since she was stable and in the ICU in great hands we decided to go out for dinner as the rest of the nights I am sure we will be by her bed side.

I will continue to post updates daily as we are in the hospital. Hopefully sooner in the day than today :)

Something Special

Today Callie is having her surgery. As we sit and wait for the long procedure a close friend gave us a package to open! And this is what we found! What a wonderful Surprise and so special. She had this done before Callie had her hair cut and surgery. As you can tell Callie was loving up the camera, what a little model! Zak was not as happy, but he did get a few good ones. We had no idea she was even working on this. It has definitely helped to pass the time today.

Photograhy by Victoria! Thank you for the amazing photos!

Shared Blessings Open House

Through the help of the Build from the Heart project, Shared Blessing was created to ensure lasting support of the community room to continue outreach for children and families of special needs children. Shared Blessings has been very busy in the short time of its existence, through the open house we continue to reach out to those in the community that can benefit the greatest.

We are very excited to be able to open the doors to Shared Blessings, Inc. Stop by and see the space, how to support or become involved with Shared Blessings!

Callie Surgery

As many of you know Callie’s Nasal passage were closed at birth and had to have surgery to reopen them. In February we had them scoped while having her tonsils out as we felt they were closed again and they were.

We were referred to Milwaukee to see a facial cranial surgeon to re-fix the choanal atresia (nasal obstruction). Much to our shock he told us Callie’s first issue is actually that her brain is too large for her skull and that she needed to have this fixed first. The reasoning behind this was she had excessive ‘thumb printing’ in her skull (basically the skull was no longer smooth and it was taking on the shape of her brain). He suggested moving the forehead and mid face out ½ inch. She would be sent home with pins that we would turn for 3 weeks. Once this was complete Callie could have the nose repaired.

Once we returned to Wausau this was discussed with our team of specialists and they thought this seemed very extensive and somewhat unnecessary. The local team thought the ‘thumb printing’ was from her hydrocephalus (extra fluid in her brain – repaired with a shunt when she was 6 mo) at birth and wanted a second opinion. We were refereed to Gillette Children’s in MN. While the referral was taking place we received all of the paperwork from Milwaukee and much to our surprise the radiology report mentioned a malformation of her neck – this was the first time we heard this. Milwaukee never once mentioned this to us while we were there.

We recently went to MN and met with the facial cranial doctor there. The clinic was absolutely amazing – extremely organized, detailed and willing to work with us. The doctor explained to us that the ‘thumb printing’ has increased since her the hydrocephalus was present in 2009. Since this was repaired he would not expect this to get worse. Also, he said the that her sutures in her brain are 100% fused. This should not be the case for a 3 year old. He even pointed out that should also not be the case at 30 years old. He said Callie absolutely needs surgery to fix this. She was officially diagnosed as having craniosynotosis. Also he was very concerned with her neck and brought in the neurosurgeon that day to see us. They ran a quick MRI while Callie was awake and Chris held her. They did learn that her spinal cord is compressed at the skull and C1 just as Zak’s was. The big difference is he does not feel that Callie’s neck is unstable and will need to be fused as Zak’s was. He believes that by just removing a piece of bone this will resolve the issue. All in all, the final determination was made this needs to be the first surgery to take place. While she is getting the neck fixed they will also extend the back of her skull to allow the brain to have the room needed. They will not be putting in any pins for us to turn (which was a relief to hear). Once that is complete we will wait 6-8 weeks to have a second surgery to extend the forehead and a third to extend the mid-face. We also saw an ENT while we were there in regards to the original issue, Choanal atresia and she was not the right person, however referred us to her partner whom she felt would be the right person. We need to make a follow up appointment with him while we are in MN.

Callie is scheduled for her first surgery on Monday October 29th. As for now she will spend 1 night in the ICU and 3-4 nights on the floor. Please say lots of prayers for Callie and family while she is going through this. We know she is in great hands at Gillette and they will take great care of her. We are very grateful to have such a wonderful group of support around our family.

A list of Updates

School has started and we have made it through a few weeks now!

Zak is at the same school as he was last year. He will remain in the same class through 5th grade. A few kids have graduated and a few have joined. He seems to really like his classmates as usual. I have been hearing wonderful things about the progress he continues to make from his Therapists and Teacher. One of his therapists that has not seen him on land (he does aquatic therapy with her) was very excited to see him walking in his gait trainer (walker for bigger kids) and pushing himself is his wheelchair. He is making such great accomplishments! He really enjoys his friends in other classes too, the 3rd grades read to them and he does sign language and other activities with the 1st graders. He is just getting to be such a big boy!

Callie is in her 2nd year of pre-k with Mrs. Amy. Callie continues to get her schooling at home where the teacher and therapists come to her. The reason we have chosen this option is to keep her healthy with the unknown surgeries ahead of us. All of her teachers/therapists have been very happy with her gains through the summer. Each week I am constantly thinking what happened to our little baby. She truly has gotten to be so big and little miss independent. Although she always has been our independent one. She is doing so many new things lately. The teacher just told me this week that she achieved one of her goals already!

We are so proud of our little babies!!

Medical Updates

There has been a lot of things going on with Callie in the Medical area. Very little with Zak and we pray it will stay that way.

Both kids had their annual special needs clinic appointment in Marshfield where several doctors and therapists get together and do a review of their progress. Everyone was very positive on Zak’s progress. He did end up getting Botox in his legs to loosen the muscles up. This should help in his walking by keeping him flat footed rather than on his tip toes. It should also help in stretching him. So far it has proven to be a success as he is already walking and standing better! Callie also had a positive appointment. We are soon going to be getting her a wheelchair too. This will help in keeping her in the proper seat position instead of a stroller and highchair. She also recently started to experiment with crawling. When she knows you are watching forget it. But when she is playing by herself she takes several steps before starting to roll!

Also, we have been watching Callie closely since she was a year old for her heart. She has pulmonary stenosis, which means the pulmonary valve (Pumps blood to the lungs) is smaller than it should be. She also has the hole in her heart still that many babies are born with. She progressively got worse up until she was a year and has maintained since. She went in at the end of August for her annual appointment which went well, however she moves to much these days to get good images so we elected to sedate her for images. She just had those images last week and her heart is still stable (even a very small amount better – which better is always nice to hear even if it is a small amount). The doctor continues to consult with the Milwaukee heart surgery team as at some point she will need surgery, however we continue to wait.

Also, Callie will be having some other surgeries for the remainder of the year.. I have done a separate post just for that one as there is so much to it.

Chris and Annie

With the little time that remains we have found a little time for ourselves. Chris continues to travel for work so the weeks are always hectic. This past weekend he was able to go duck hunting which is something he was not able to enjoy doing last year. Hopefully he will be able to spend more time out this fall between duck and deer hunting. As for Annie, well she joined her very first 5k run. The girls and her are heading to Madison on Oct 12th for an overnight stay as the run is on Sat. It supports Ronald McDonald house which you all know is very near and dear to our heart as they have provided our family with a place to stay and support throughout the past 7 ½ years.

Pictures from Annie

Click here to view these pictures larger

10 Years and Counting

Chris and I recently celebrated our 10 year anniversary. It is hard to believe how much we have grown and changed together in the past 10 years. I truly married my best friend and am so grateful to have Chris and his family part of my life. All if fun I put my wedding dress back on and we took a few pictures in the back yard! It fit once again :)



And 10 years Ago!!

Shared Blessings, Inc WON!!!!!

Shared Blessings, Inc. won the $5,000 from the River Valley Bank Community for a Cause charitable program! We are all SO EXCITED!! A very special thank you to all those that took time out of their busy schedules to vote for Shared Blessings, Inc. and huge THANK YOU to River Valley Bank for providing this amazing opportunity to community organizations like Shared Blessing, Inc.' and for being so incredibly kind and charitable. You have truly made a difference in the lives of children with special needs. The doors to Shared Blessings, Inc.  are opening thanks to all of you!

Watch for more information on Shared Blessings, Inc. Soon! We have recently started a Facebook page as well! http://www.facebook.com/SharedBlessingsInc?ref=hl

Next week we will be meeting with River Valley Bank for the presentation of the check. As soon as we do that I will be sure to post pictures!

Where does time go?

It has been a long time since I have posted. The great news is I have been busy with Shared Blessing, Inc which is why I have not wrote much lately. I decided I needed to take a quick break and get back on track with the blog too.

Where has time gone. I feel like the summer is flying by. Zak did 6 weeks of summer school and was able to swim at school for an hour each day. He is a BIG fish! He has been progressing so much. We have a pool at home now too. Zak cannot touch as it is 4 feet deep. We put him in the floating and he swims on his own. My brother got to see him and was so surprised how well he does. He makes us so Proud how well he has come.

Callie is still a little spit fire. She has taken up crawling a little bit. She will take several steps in a row now. She does not do it often but a little bit each day. Soon she will be all over the house. I cannot wait! She too likes the pool. Not quite as much as Zak, but she enjoys herself. This is her first year in a big pool. At the beginning she would cry when she got in (which she does with a bath too, so no big surprise). Now it is all of 30 seconds and she is happy. She loves to splash and spin in circles. We too are so proud of how well she is doing.

As for medical thankfully that has gotten better in comparison to the beginning of the year. Callie did have her 3^rd eye surgery for the ptosis (lazy eyelid) which the surgery itself was a success, however she did get MRSA (Staph infection very had to treat with first line antibiotics) in one of the incisions above her eyebrow. With the antibiotics that she had to be on to treat the infection she ended up with c-diff (severe diarrhea and other intestinal disease when competing bacteria in the stomach flora have been wiped out by antibiotics.). This was an ongoing issues for about a month and a half and thankfully is doing great now.
As for Zak, he had some retesting done for is immunity and is being watched for an antibody disorder. His levels were low therefore they gave him an injection which raised them and retested again. He responded well and his levels did increase. They will retest him again in a year and see how he does. Also, he had an adult tooth come in behind a baby tooth. We all wiggled it as much as possible and it just was not coming out. The dentist had to finally pull it just to get it out. He did amazing with it and did not even cry once.

This coming week will be a travel to Milwaukee for Callie. It was determined through her sleep study, scope and CT that she has a deviated septum and the surgery she had a birth for Coanal Atresia (nasal airway closed) is starting to close again on her right nostril. We are not sure what all that means yet so we are going to see a new doctor in Milwaukee that specializes in this. They will so a much more detailed CT scan and then we will meet with him. Tuesday we spend the day in Marshfield with both kids as they have their annual special needs clinic where they meet with several doctors and therapists to be sure we are following the proper care plan for each child and receiving the correct therapies. They also determine if they have any other medical needs or equipment needs. As much as I hate it since it becomes very apparent what additional needs they do have, it is very helpful to have a whole team working together to make sure we are getting the proper treatments for both kids.

Stay tuned - I hope to be better with my posts!

As for Shared Blessings, Inc. Lots of very exciting things happening. The Board has been very busy meeting trying to get all the paper work done to actually open the doors this fall. We have an amazing group of very diverse individuals on the board. We have started a Facebook page ( search for Shared Blessings, Inc). We are starting to work on a Fundraiser for the fall/winter. Watch for more details to come. The non-profit application is complete and ready to be mailed out. If you want more information on helping or being involved with Shared Blessings, Inc. please send me an e-mail at cateeters@charter.net

We need your help!

Build from the Heart (the project that helped to Build our family a handicap home with a Community room for Special Needs Families) is now complete! The home and community area are built and now it is time to open the doors. Shared Blessings, Inc is the name of the non-profit that will be starting in the Community room. This will allow a place for special needs children and their families to go for playgroups, support groups and ongoing education and relationships. Something much needed in our community.

River Valley Bank was one of the major Sponsors behind Build from the Heart! They are currently running a new program Community for a Cause. Giving away a total of $7,000! First place will receive $5,000 and 2^nd and 3^rd will receive $1,000 each. Shared Blessings, Inc has posted our video and made it into the top 6 nominees. Now we need your help! The video with the most votes wins.

 You can vote once per day for the next 3 weeks.

 Direct link: http://apps.facebook.com/contestshq/contests/222731/voteable_entries

To access the voting page search Facebook for River Valley Bank. Click on the icon towards the top is an icon C4C. Choose Vote now. Find Shared Blessings, Inc. and vote daily!!

Thank you for your continued support in helping up start the playgroups for the many families around Marathon County and surrounding areas sooner rather than later!

Birthday Pictures

We were finally able to get the kids Birthday pictures done. Callie - 3 and Zak - 7. Where does the time go? Both kids were a bit cranky during pictures and you would not know it by looking at the pictures! Photos were taken by Nicole Rae Photography in Edgar. She does a wonderful job with the kids!